Peripartum cardiomyopathy (PPCM) is an acute, traumatic, and life-threatening form of heart failure with left ventricular dysfunction, occurring in the last trimester of pregnancy or up to 5 months postpartum. Incidence of PPCM ranges from approximately 1 of 968 live births (Kolte et al., 2014) to 1 of 4,350 live births (Yaranov & Alexis, 2019) in the United States. Negative outcomes can include maternal death, fetal loss, fetal prematurity, and future pregnancy prohibition (Arany & Elkayam, 2016). Risk factors include older age, being Black, and having preeclampsia, hypertension, or multiple gestation (Arany & Elkayam; Scardovi & De Maria, 2017). Mortality risk for women living with PPCM varies geographically; worldwide mortality rate is 9%, with higher rates in developing countries (14%) and lower rates in advanced countries (4%) (Kerpen et al., 2019). Cardiac function normalizes within 1 year for approximately 90% of women who experience PPCM (McNamara et al., 2015). Of those with persistent heart disease, 25% may require a heart transplant (Rasmusson et al., 2012).
Considerable PPCM research has focused on possible etiologies, prevalence, and treatment outcomes. Increased oxidative stress, inflammatory reactions, and angiogenesis imbalance involving prolactin have been proposed as mechanisms in its pathophysiology (Azibani & Sliwa, 2018). Women with a history of perinatal depression may be at increased risk for developing PPCM because of inflammatory and oxidative stress responses (Nicholson et al., 2016). Few studies have focused on the psychosocial aspects of women with PPCM. Women experiencing PPCM speak of horror, intense fear, and impending death (Donnenwirth & Hess, 2017; Patel, Berg, Barasa, Begley, & Schaufelberger, 2016). They are devastated by the abrupt loss of their health, limited opportunities to bond with their baby, and the diminished possibility of future pregnancies (Dekker, Morton, Singleton, & Lyndon, 2016).
The childbirth experience can be traumatic. Some researchers have reported women develop post-traumatic stress (PTS) at a rate of almost 30% worldwide (Simpson & Catling, 2016). McKenzie-McHarg et al. (2015) found a traumatic childbirth experience “differs from other potentially traumatic events due to its culturally positive connotations, the need to consider at least two individuals at all times (mother and baby), ... and the potential issues for the mother of caring for a baby who may remind her of the trauma” (p. 220).
Women with PPCM reported depression (Rosman, Salmoirago-Blotcher, Cahill, Wuensch, & Sears, 2017) as well as adverse social and emotional consequences (Hess & Weinland, 2012; Puma, 2015) and lower quality of life (QOL) after diagnosis (Koutrolou-Sotiropoulou, Lima, & Stergiopoulos, 2016). There are limited data on PTS or depression in relation to QOL. Therefore, this study examined the relationships among PTS, depression, and QOL in women with PPCM.
Study Design & Methods
This cross-sectional, correlational survey study examined the relationship among maternal PTS, depression, and QOL in self-identified women with PPCM. Women were recruited through the social networking Facebook site, “peripartum cardiomyopathy survivor support group.”
Facebook, an international online social media platform, is independent of any government, medical, or hospital organization. This study received approval from the institutional review board of a healthcare foundation in Northeast Ohio.
The administrator of the Peripartum Cardiomyopathy Survivor Support Group granted the first author permission to join the group and to post information about the study. Every other week from August through December 2015, we posted on FB a short description of the study and the link to the online survey using the Quintessential Instructional Archive, Quia, a secure web-based repository for tests, quizzes, and academic activities. The survey included 120 items and took approximately 30 minutes to complete. Response rate could not be determined because group members included not only women with PPCM, but also their supporters. Completion rate was 71.7% (28 of 39 women with PPCM). Completion of the survey implied consent.
Post-traumatic stress, and women's emotional and psychological response to PPCM in the past 7 days, was measured by the 15-item Likert-type Impact of Event Scale (IES) (Horowitz, Wilner, & Alvarez, 1979). The IES has two subscales: 7-item Intrusion and an 8-item Avoidance scales, each with four choices: (0) not at all; (1) rarely; (3) sometimes; and (5) often. The original reliability was .86 for the entire scale, .78 for intrusion subscale, and .82 for avoidance subscale (Horowitz et al.). Intrusion, or reexperiencing, the reactivation of symptoms experienced previously (Fossion et al., 2015), is characterized by unbidden thoughts, strong waves of feelings, and unsettled dreams (Horowitz et al.). Avoidance symptoms associated with traumatic events include shunning places, people, feelings, or activities associated with the traumatic event (Fossion et al.). Avoidance responses include denial of meanings or aftereffects of the event, dulled sensations, and emotional numbness (Horowitz et al.). All 15 items were summed to generate the score (range 0-75; the higher the score the more severe the impact of the trauma). The cutoff scores for the impact of the traumatic event were: 0-8 (no impact); 9-25 (minimal impact); 26-43 (powerful impact); and 44-75 (severe impact). Scores above 26 are critical (Horowitz et al.).
Depression, the women's report of sadness, lack of interest, hopelessness, and somatic complaints, was measured by the 20-item Center for Epidemiology Scale–Depression (CES-D) (Radloff, 1977). Internal consistency of the original tool was 0.90 in a community-dwelling sample. The four Likert-style response options, based on feelings during the past week, ranged from (0) rarely or none of the time (less than 1 day) to (3) most or all of the time (5-7 days). The score is the sum of 20 statements (range 0-60; the higher the score, the greater the depression). A score of ≥ 16 indicates significant depression (Radloff).
Ferrans and Powers' Quality of Life Index©–Cardiac Version-IV (QLI) was used to measure QOL, the sense of well-being from satisfaction or dissatisfaction in important areas of life (https://qli.org.uic.edu/). This instrument consists of two parts of 35 items each. The first measures satisfaction with various aspects of life and the second measures importance of those same aspects. Six Likert-format response options range from (1) very dissatisfied/unimportant to (6) very satisfied/important. Total scores were computed by weighting the satisfaction answers with the importance answers (range 0-30 for the total scale and for each subscale; the higher the score, the better the QOL) (Ferrans & Powers, 1985). Internal consistency of this scale was established with a sample of heart failure patients at 0.89 (Scott, Setter-Kline, & Britton, 2004).
All instruments and their subscales had an internal consistency greater than 0.70 in this sample. Descriptive and inferential statistics were generated. Pearson's r was used to examine correlations between two variables. Independent sample t-test was used to assess differences of means. Statistical significance was set at p < .05. All results are deemed exploratory.
Thirty-nine women with PPCM initiated the survey and 28 completed it (71.7% completion rate). They ranged in age from 23 to 48, mean age 35.6 years. Twenty-four participants (85.7%) were married. Twenty six (92.9%) were Caucasian. Sixteen (59%) indicated they were Christians, 10 (37%) claimed no religious affiliation, and the other two of unknown faith. All the participants but one had at least some college-level education, eight a bachelor's degree, and six a master's degree. Twenty four (85.7%) were employed. Time since their diagnosis of PPCM ranged from 1 to 13 years (mean 3.6 years). Cardiac ejection fraction at diagnosis ranged from 7% to 45%. Sixteen (61.5%) were multiparous at diagnosis for PPCM. Five (18.5%) had at least one pregnancy after diagnosis.
Most participants (23 of 28, or 82.2%) registered a powerful or severe impact from PPCM. For the total sample, the IES mean was 40.5, with a range of 0 to 73. Subscale means are shown in Table 1. Twelve of 28 women (43.0%) were living with high intrusion levels and seven of 28 (25.0%) with high avoidance levels. Seven women (25%) were still experiencing a powerful-to-severe impact of PPCM 4 or more years after diagnosis. Post-traumatic stress was significantly associated with education level (p = 0.029); the 14 women (50%) who were not college graduates had a significantly higher PTS mean score.
All the women in this sample screened “depressed” per the CES-D cut-off point of 16 (Radloff, 1977). The sample mean on the CES-D was 35.8 with a range of 18 to 47. Table 1 displays the sample means for the CES-D and its subscales. Over three-quarters of the women indicated everything they did was an effort occasionally or most days. Seventy-five percent said they were fearful occasionally or most days and 71% had trouble keeping their mind on things occasionally or most days. Depression was significantly associated with education level (p = 0.014); the 14 women (50%) who were not college graduates had a significantly higher depression mean score. See details in Table 2. A significant, positive, strong correlation was found between PTS and depression (r = .81; p = < 0.000). See Supplemental Digital Content, Table 3, http://links.lww.com/MCN/A60 for additional correlations.
Women with PPCM in this sample were living with moderate-to-good QOL. The sample mean on the Quality of Life Index©–Cardiac Version-IV was 16.58 with a range of 10 to 22. The four Quality of Life Index©–Cardiac Version-IV subscale means are displayed in Table 1. Employment was significantly associated with a better QOL (p = 0.025); the four women who were unemployed had a significantly lower QOL mean score. See Table 2 for more details.
A significant inverse correlation was found between PTS and QOL (r = -.45; p = 0.015). Women with PTS (n = 22) had a slightly lower mean total Quality of Life Index©–Cardiac Version-IV mean of 18.62 than women without PTS (n = 6) (16.03) but not statistically significant (p = 0.085). A significant inverse correlation was found between QOL and depression (r = -.55; p = 0.003). Correlations between scales and subscales are displayed in Table 2. Post-traumatic stress and depression means were lower and QOL improved among women with PPCM with more years since diagnosis, though improvement did not reach statistical significance (p = 0.083, 0.092, 0.071, respectively).
Most of the women in our study were greatly affected by PPCM. Even several years after the event, many women scored high on the IES similar to findings in previous research. Participants reported experiencing more intrusive symptoms than avoidance ones. This condition severely intruded on their lives through ongoing physical limitations and cognitive triggers, which caused strong emotional reactions. Most women, except for some first-time mothers, did not react by avoidance measures. Participation in online support groups and research studies reinforces this finding; women with PPCM want to learn more about their cardiomyopathy, hear about other women's experiences, and share their stories rather than avoid interaction (Dekker et al., 2016).
All of the women were depressed per the CES-D cutoff score, higher than other reports. In previous research, Rosman et al. (2017) found 32% of women with PPCM (n = 177) were depressed with a median 3 years since diagnosis. Data on mental health history were not collected in our study. Women with PPCM in other studies revealed additional issues may contribute to their depression: disrupted mothering (Dekker et al., 2016; de Wolff et al., 2018); internalized anger because of delayed diagnosis and/or perceived neglect by physicians and nurses (Hess & Weinland, 2012; Patel, Schaufelberger, Begley, & Berg, 2016); and an unfulfilled desire for more children (Dekker et al.; Donnenwirth & Hess, 2017). Puma (2015) reported women with PPCM, on medications for post-traumatic stress disorder and depression, described depressive symptoms mixed with fear of dying, insomnia, and residual anger. More research is needed to pinpoint the predictors of depression among women with PPCM.
The relationship between PTS and depression among women in our study was strong. Our findings coincide with previous research among new mothers in the United States which showed that PTS was positively correlated with depressive symptoms (Beck, Gable, Sakala, & Declercq, 2011). Çapik and Durmaz (2018) found fear of childbirth and postpartum depression positively predicted PTS after childbirth among 301 women in Turkey. Grekin and O'Hara (2014) reported postpartum depression had the strongest association with PTS symptoms. In our study, Quality of Life Index©–Cardiac Version-IV family subscale scores indicated the participants were moderately satisfied with the QOL of their families based on children's health, happiness, and family emotional support. Our findings coincide with the Rosman, Salmoirago-Blotcher, Cahill, and Sears (2019) study among 149 women with PPCM. In that study, the top two concerns were nonadherence to self-care regime and worrying about the child developing a heart condition.
In our study, the women's time since diagnosis ranged from 1 to 13 years. The more years it was since diagnosis, the better the QOL; the strength of the correlation between years since diagnosis and QOL was moderate. Some women struggled to find a good QOL similar to Koutrolou-Sotiropoulou et al. (2016) who found nearly half of their participants never returned to their emotional and physical baseline.
Our participants reported negative aspects of psych-mental health; all reported depression and over 82% reported post-traumatic symptoms. Untreated depression in pregnancy can have a negative impact on perinatal outcomes, QOL, relationship with the infant–child, and healthy family transitions (Breedlove & Fryzelka, 2011). Women with PPCM may choose to focus on physical recovery immediately after diagnosis and struggle to regain psychological balance, with more women failing to return to their emotional baseline than to their physical baseline (de Wolff et al., 2018). Mental health referrals are vital to emotional and psychological recover of women with PPCM.
This study had several limitations. The sample size was small and not representative of the target population. Response bias was possible due to the nature of convenience sampling; women aware of problems of PTS, depression, and QOL may have more readily volunteered than women without these issues. Despite these limitations, the study adds important evidence that women with PPCM face a long recovery from heart failure including issues with depression and PTS.
Our findings broaden understanding of the relationship between PTS, depression, and QOL among women with PPCM. During pregnancy and the postpartum period, healthcare professionals, particularly those working in urgent care or obstetric settings, must be vigilant, listening to women expressing symptoms that might be indicative of PPCM (Hess & Weinland, 2012). Healthcare providers need to develop competence and clinical skills to recognize and differentiate between normal physiological changes in late pregnancy and symptoms of PPCM. Symptoms include crackles or rales in the lower lungs, jugular vein distention, a displaced point of maximal impulse of the apical pulse, and pitting edema (Fuster, Walsh, & Harrington, 2011). Assessment of pregnant women or those who have given birth within the previous 5 months, particularly those presenting in the emergency department with fatigue, shortness of breath, excessive swelling, and weight gain, should receive a chest x-ray, echocardiogram, and a blood test for B-type natriuretic peptide. A markedly elevated B-type natriuretic peptide may be an indication of heart failure (Hilfiker-Kleiner, Haghikia, Nonhoff, & Bauersachs, 2015).
The degree and extent of a traumatic hospitalization, as measured by worsening QOL and depression, can predict future PTS symptoms (El-Jawahri et al., 2016). Lifelong postpartum PTS symptoms have devastating effects on women including suicidal ideations, difficulties with sexual intimacy, threats for family disruption, and difficulties with mother–child interactions (McKenzie-McHarg et al., 2015; Simpson & Catling, 2016). Qualitative research studies that systematically describe PTS symptoms that develop after injuries and medical illnesses are needed (Moye & Rouse, 2015).
Education of clinicians will contribute to raising awareness of the sequelae of PPCM. A constant and systematic approach should be developed to prevent, diagnose, and treat PPCM-related depression and PTS. Education programs for healthcare providers must emphasize awareness and sensitive communication skills when addressing women's psychosocial concerns (Fowler et al., 2017).
- Even though peripartum cardiomyopathy is rare, nurses and other healthcare providers need to take action to differentiate symptoms of peripartum cardiomyopathy from physical symptoms commonly presented in the late stages of pregnancy.
- When peripartum cardiomyopathy is confirmed, screening should be done for depression, post-traumatic stress, and quality of life.
- When screening is positive for depression and post-traumatic stress, nursing interventions should include mental health clinic referral for further assessment of clinical depression and post-traumatic stress disorders.
- When clinical depression and post-traumatic stress disorders are confirmed, nurses work collaboratively with psychiatrists, psychologists, social workers, and other healthcare professionals to treat and care for the woman.
- If compromised quality of life is detected, nurses work with the woman, her family, and other healthcare professionals to address her needs and maximize health outcomes.
- Education for healthcare professionals should be established to emphasize awareness of peripartum cardiomyopathy and sensitive communication skills to address the women's psychosocial concerns.
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